Community-engaged Research Partnerships Research Articles

Ventilation during COVID-19 in a school for students with intellectual and developmental disabilities (IDD).

This study examined the correlation of classroom ventilation (air exchanges per hour (ACH)) and exposure to CO2 ≥1,000 ppm with the incidence of SARS-CoV-2 over a 20-month period in a specialized school for students with intellectual and developmental disabilities (IDD). These students were at a higher risk of respiratory infection from SARS-CoV-2 due to challenges in tolerating mitigation measures (e.g. masking). One in-school measure proposed to help mitigate the risk of SARS-CoV-2 infection in schools is increased ventilation. We established a community-engaged research partnership between the University of Rochester and the Mary Cariola Center school for students with IDD. Ambient CO2 levels were measured in 100 school rooms, and air changes per hour (ACH) were calculated. The number of SARS-CoV-2 cases for each room was collected over 20 months. 97% of rooms had an estimated ACH ≤4.0, with 7% having CO2 levels ≥2,000 ppm for up to 3 hours per school day. A statistically significant correlation was found between the time that a room had CO2 levels ≥1,000 ppm and SARS-CoV-2 PCR tests normalized to room occupancy, accounting for 43% of the variance. No statistically significant correlation was found for room ACH and per-room SARS-CoV-2 cases. Rooms with ventilation systems using MERV-13 filters had lower SARS-CoV-2-positive PCR counts. These findings led to ongoing efforts to upgrade the ventilation systems in this community-engaged research project. There was a statistically significant correlation between the total time of room CO2 concentrations ≥1,000 and SARS-CoV-2 cases in an IDD school. Merv-13 filters appear to decrease the incidence of SARS-CoV-2 infection. This research partnership identified areas for improving in-school ventilation.

Population Health Improvement Awards: Supporting Community and Academic Capacity to Partner in Research and Improve Population Health.

The Duke Clinical and Translational Science Institute Community Engaged Research Initiative began its Population Health Improvement Awards grant program in 2017. This program builds community-engaged research capacity by promoting the formation of community-academic research teams, educating researchers about equitable partnerships, and empowering community members and organizations to access academic research resources. With a focus on community-identified priorities, the program purposefully engages local communities in an enterprise that has traditionally labeled community members as "participants" rather than "partners." Key elements of the program include innovation, relationship building, and power sharing; education and research system navigation; iterative adaptation using the Plan-Do-Study-Act framework; and continual program improvements based on applicant feedback to ensure that the program becomes a national leader in funding local community-engaged research partnerships.

Data sharing in the context of community-engaged research partnerships

Over the past 20 years, the National Institutes for Health (NIH) has implemented several policies designed to improve sharing of research data, such as the NIH public access policy for publications, NIH genomic data sharing policy, and National Cancer Institute (NCI) Cancer Moonshot public access and data sharing policy. In January 2023, a new NIH data sharing policy has gone into effect, requiring researchers to submit a Data Management and Sharing Plan in proposals for NIH funding (NIH. Supplemental information to the, 2020b; NIH. Final policy for data, 2020a). These policies are based on the idea that sharing data is a key component of the scientific method, as it enables the creation of larger data repositories that can lead to research questions that may not be possible in individual studies (Alter and Gonzalez, 2018; Jwa and Poldrack, 2022), allows enhanced collaboration, and maximizes the federal investment in research. Important questions that we must consider as data sharing is expanded are to whom do benefits of data sharing accrue and to whom do benefits not accrue? In an era of growing efforts to engage diverse communities in research, we must consider the impact of data sharing for all research participants and the communities that they represent.We examine the issue of data sharing through a community-engaged research lens, informed by a long-standing partnership between community-engaged researchers and a key community health organization (Kruse et al., 2022). We contend that without effective community engagement and rich contextual knowledge, biases resulting from data sharing can remain unchecked. We provide several recommendations that would allow better community engagement related to data sharing to ensure both community and researcher understanding of the issues involved and move toward shared benefits. By identifying good models for evaluating the impact of data sharing on communities that contribute data, and then using those models systematically, we will advance the consideration of the community perspective and increase the likelihood of benefits for all.

Rochester Healthy Community Partnership: Then and now.

Community-engaged research partnerships promote health equity through incorporation of regional contexts to inform partnership dynamics that shape research and interventions that reflect community voice and priorities. Long-term partnerships build trusted relationships and promote capacity building among community and academic partners, but there are many structural barriers to sustaining long-term partnerships. Here we describe lessons learned from sustaining Rochester Healthy Community Partnership (RHCP), an 18-year community-based participatory research (CBPR) partnership in Southeast Minnesota. RHCP collaborates with immigrant and refugee populations to co-create interventions that promote health equity for community health priorities. Challenges to sustainability include a tension between project-based funding and the needs of long-term community-based research infrastructure. These challenges can be met with a focus on shared CBPR principles, operating norms, partnership dynamics, and governance. RHCP began in 2004 through identification of a community health priority, defining the community, and establishment of CBPR principles. It grew through identification of broader community health priorities, capacity building for community and academic partners, and integration of diverse learners. We describe the capacity for RHCP to respond to new societal contexts, the importance of partnership dynamics as a barometer for partnership health, and lessons learned about sustainability of the CBPR partnership.

Developing relevant assessments of community-engaged research partnerships: A community-based participatory approach to evaluating clinical and health research study teams.

In 2017, the Michigan Institute for Clinical and Health Research (MICHR) and community partners in Flint, Michigan collaborated to launch a research funding program and evaluate the dynamics of those research partnerships receiving funding. While validated assessments for community-engaged research (CEnR) partnerships were available, the study team found none sufficiently relevant to conducting CEnR in the context of the work. MICHR faculty and staff along with community partners living and working in Flint used a community-based participatory research (CBPR) approach to develop and administer a locally relevant assessment of CEnR partnerships that were active in Flint in 2019 and 2021. Surveys were administered each year to over a dozen partnerships funded by MICHR to evaluate how community and academic partners assessed the dynamics and impact of their study teams over time. The results suggest that partners believed that their partnerships were engaging and highly impactful. Although many substantive differences between community and academic partners' perceptions over time were identified, the most notable regarded the financial management of the partnerships. This work contributes to the field of translational science by evaluating how the financial management of community-engaged health research partnerships in a locally relevant context of Flint can be associated with these teams' scientific productivity and impact with national implications for CEnR. This work presents evaluation methods which can be used by clinical and translational research centers that strive to implement and measure their use of CBPR approaches.

Adaptation of a bidirectional crisis and emergency risk communication framework by community-engaged research partnerships in rural Mississippi during the COVID-19 pandemic

Community engagement is important for reaching populations at risk for health inequities in the coronavirus disease 2019 (COVID-19) pandemic. A community-engaged risk communication intervention implemented by a community-engaged research partnership in Southeast Minnesota to address COVID-19 prevention, testing, and socioeconomic impacts has demonstrated high acceptability, feasibility, perceived efficacy, and sustainability. In this study, we describe the adaptation of the intervention by a community-academic partnership with rural African American populations in three Mississippi counties with high COVID-19 disparities. Intervention reach was assessed by the number of messages delivered by Communication Leaders to members of their social networks. Perceived scalability of the intervention was assessed by the Intervention Scalability Assessment Tool. Bidirectional communication between Communication Leaders and community members within their social networks was used by the partnership to refine messages, meet resource needs, and advise statewide decision-makers. In the first 3 months, more than 8482 individuals were reached in the three counties. The intervention was deemed to be highly scalable by partnership members. Adaptation of a community-engaged pandemic CERC intervention is feasible and scalable, and it has the potential to reduce COVID-19 inequities across heterogeneous populations. This approach may be incorporated into current and future pandemic preparedness policies for community engagement.

Perspectives of African American Church Leaders in Response to COVID-19 Emergency Preparedness and Risk Communication Efforts Within a Community Engaged Research Partnership: COVID-19 emergency risk communication.

Perspectives of African American Church Leaders in Response to COVID-19 Emergency Preparedness and Risk Communication Efforts Within a Community Engaged Research Partnership: COVID-19 emergency risk communication.

Community-Engaged Bidirectional Crisis and Emergency Risk Communication With Immigrant and Refugee Populations During the COVID-19 Pandemic.

This study was conducted to assess an intervention that was created by a community-academic partnership to address COVID-19 health inequities. We evaluated a community-engaged bidirectional pandemic crisis and emergency risk communication (CERC) framework with immigrant and refugee populations during the COVID-19 pandemic. A 17-year community-engaged research partnership adopted a CERC framework in March 2020 to address COVID-19 prevention, testing, and socioeconomic impacts with immigrant and refugee groups in southeast Minnesota. The partnership used bidirectional communication between communication leaders and their social networks to refine messages, leverage resources, and advise policy makers. We conducted a mixed-methods evaluation for intervention acceptability, feasibility, reach, adaptation, and sustainability through multisource data, including email communications, work group notes, semistructured interviews, and focus groups. The intervention reached at least 39 000 people in 9 months. It was implemented as intended and perceived efficacy was high. Frequent communication between community and academic partners allowed the team to respond rapidly to concerns and facilitated connection of community members to resources. Framework implementation also led to systems and policy changes to meet the needs of immigrant and refugee populations. Community-engaged CERC is feasible and sustainable and can reduce COVID-19 disparities through shared creation and dissemination of public health messages, enhanced connection to existing resources, and incorporation of community perspectives in regional pandemic mitigation policies.

Research From a Diné-Centered Perspective and the Development of a Community-Based Participatory Research Partnership.

Purpose. Indigenous (Diné) communities have long endured high rates of behavioral and mental health diseases like depression, drug and alcohol dependency, and suicide due to historical trauma and posttraumatic stress disorders. Western research methods used to address these issues have often failed to provide sufficient understanding of the culturally nuanced dynamics underpinning these health disparities in Indigenous contexts. As a result, Indigenous health disparities have actually increased and complex culture-based relationships that influence health outcomes are underconceptualized. Aim. For the first time a community-based participatory research approach from a Diné perspective is introduced to three Navajo communities in New Mexico to collaboratively explore their perspectives about community-engaged research and community well-being from a Diné lens. The overarching research question was: Can a community-based participatory research approach embedded within a Diné research paradigm be utilized to develop a culturally centered intervention approach? Methods. The study utilized a mixed method approach that included surveys and focus groups. Results. Six overarching themes emerged that underscored the important role of utilizing a community-based participatory Diné-centered approach to define community well-being and increase community agency to address their own health disparities. Conclusion. Indigenous-centered community-engaged research can potentially become an intervention approach for informing Indigenous communities' understandings of well-being by drawing upon local cultural Indigenous knowledge. This study demonstrated that developing an effective community-engaged research partnership to address health disparities in a Diné context must be informed by a Diné paradigm grounded in local community cultural knowledge.

Recognizing Cross-Institutional Fiscal and Administrative Barriers and Facilitators to Conducting Community-Engaged Clinical and Translational Research.

This qualitative study examined fiscal and administrative (i.e., pre- and post-award grants process) barriers and facilitators to community-engaged research among stakeholders across 4 Clinical and Translational Science Awards (CTSA) institutions. A purposive sample of 24 key informants from 3 stakeholder groups-community partners, academic researchers, and research administrators-from the CTSA institutions at the University of North Carolina at Chapel Hill, Medical University of South Carolina, Vanderbilt University Medical Center, and Yale University participated. Semistructured interviews were conducted in March-July 2018, including questions about perceived challenges and best practices in fiscal and administrative processes in community-engaged research. Transcribed interviews were independently reviewed and analyzed using the Rapid Assessment Process to facilitate key theme and quote identification. Community partners were predominantly Black, academic researchers and research administrators were predominantly White, and women made up two-thirds of the overall sample. Five key themes were identified: level of partnership equity, partnership collaboration and communication, institutional policies and procedures, level of familiarity with varying fiscal and administrative processes, and financial management expectations. No stakeholders reported best practices for the institutional policies and procedures theme. Cross-cutting challenges included communication gaps between stakeholder groups; lack of or limits in supporting community partners' fiscal capacity; and lack of collective awareness of each stakeholder group's processes, procedures, and needs. Cross-cutting best practices centered on shared decision making and early and timely communication between all stakeholder groups in both pre- and post-award processes. Findings highlight the importance of equitable processes, triangulated communication, transparency, and recognizing and respecting different financial management cultures within community-engaged research. This work can be a springboard used by CTSA institutions to build on available resources that facilitate co-learning and discussions between community partners, academic researchers, and research administrators on fiscal readiness and administrative processes for improved community-engaged research partnerships.

Navigating Personal, Professional, Institutional, and Relational Dimensions of Community-Engaged Research

As universities around the world face plunging revenues coupled with rising expenses, many argue that today’s post-secondary sector is in crisis (Anderson et al., 2020). In some regions, budgetary challenges are exacerbated by performance-based funding models that place an increased focus on impacting local economics and communities more broadly (e.g., Blue Ribbon Panel on Alberta’s Finances, 2019). In response to growing public, personal, and institutional demands for post-secondary institutions to improve their relevance and impact, increasing numbers of academics are pursuing community-engaged approaches to their research. In this paper, two Canadian researchers provide a collaborative autoethnographic account that reflects on and examines their experiences with meaningful and authentic community-engaged research partnerships. The authors explore themes associated with navigating personal, professional, institutional, and relational dimensions of faculty community engagement. In doing so, they draw on and present a modified version of Wade and Demb’s (2009; Demb & Wade, 2012) faculty engagement model that includes relational factors informed by Bringle and Hatcher’s (2002) theoretical framework of relationships. The results of this collaborative autoethnography have broad implications for the practice of research, including implications for work-life balance, tenure and promotion, how service is recognized/categorized, and institutional ethics review board processes.

Using attendance data for social network analysis of a community-engaged research partnership.

The Rockefeller University Center for Clinical and Translational Science (RU-CCTS) and Clinical Directors Network (CDN), a Practice-Based Research Network (PBRN), fostered a community-academic research partnership involving Community Health Center (CHCs) clinicians, laboratory scientists, clinical researchers, community, and patient partners. From 2011 to 2018, the partnership designed and completed Community-Associated Methicillin-Resistant Staphylococcus Aureus Project (CAMP1), an observational study funded by the National Center for Advancing Translational Sciences (NCATS), and CAMP2, a Comparative Effectiveness Research Study funded by the Patient-Centered Outcomes Research Institute (PCORI). We conducted a social network analysis (SNA) to characterize this Community-Engaged Research (CEnR) partnership. Projects incorporated principles of Community-Based Participatory Research (CAMP1/2) and PCORI engagement rubrics (CAMP2). Meetings were designed to be highly interactive, facilitate co-learning, share governance, and incentivize ongoing engagement. Meeting attendance formed the raw dataset enriched by stakeholder roles and affiliations. We used SNA software (Gephi) to form networks for four project periods, characterize network attributes (density, degree, centrality, vulnerability), and create sociograms. Polynomial regression models were used to study stakeholder interactions. Forty-seven progress meetings engaged 141 stakeholders, fulfilling 7 roles, and affiliated with 28 organizations (6 types). Network size, density, and interactions across organizations increased over time. Interactions between Community Members or Recruiters/Community Health Workers and almost every other role increased significantly across CAMP2 (P < 0.005); Community Members' centrality to the network increased over time. In a partnership with a highly interactive meeting model, SNA using operational attendance data afforded a view of stakeholder interactions that realized the engagement goals of the partnership.

Leveraging community engaged research partnerships for crisis and emergency risk communication to vulnerable populations in the COVID-19 pandemic.

Community engagement is important for reaching vulnerable populations in the coronavirus disease 2019 (COVID-19) pandemic. A risk communication framework was implemented by a community-engaged research (CEnR) partnership in Southeast Minnesota to address COVID-19 prevention, testing, and socioeconomic impacts. Bidirectional communication between Communication Leaders and community members within their social networks was used by the partnership to refine messages, leverage resources, and advise policy makers. Over 14 days, messages were delivered by 24 Communication Leaders in 6 languages across 9 electronic platforms to 9882 individuals within their networks. CEnR partnerships may effectively implement crisis and emergency risk communication to vulnerable populations in a pandemic.

Addressing power dynamics in community-engaged research partnerships

BackgroundSuccessful community-engaged research depends on the quality of the collaborative partnerships between community -members and academic researchers and may take several forms depending on the purpose which dictates the degree to which power dynamics are handled within the collaborative arrangement.MethodsTo understand the power dynamics and related concepts within community-engaged research arrangements, a secondary analysis of an existing qualitative data set was undertaken. Two models of community-engaged research, a review of literature, and the applied experiences of researchers familiar with community engagement practices confirmed the power dynamics concepts used to carry out the analysis of the qualitative data set according to the principles of directed content analysis. This analysis yielded quotes on power dynamics and related issues. Tools to address the power dynamics exposed by the quotes were selected using the literature and lived experience of the researchers. Finally, to ensure trustworthiness, the selected quotes on power dynamics and the recommended tools were subjected to naturalistic treatment using peer debriefings and triangulation.ResultsAnalysis of existing qualitative data made clear that community-engaged research between health practitioners and communities may take several forms depending on the purpose and dictate how power dynamics, including inequities, biases, discrimination, racism, rank and privilege, are handled within the collaborative arrangement. Three tools including implicit bias training, positionality, and structural competency may be used to address power dynamics and related concepts.ConclusionAnalysis of the qualitative data set highlighted the power dynamics within different community-engaged research models and the tools that may be used to address inequitable power dynamics including implicit bias training, positionality, and structural competency.

Trust in Community-Engaged Research Partnerships: A Methodological Overview of Designing a Multisite Clinical and Translational Science Awards (CTSA) Initiative

Trust in Community-Engaged Research Partnerships: A Methodological Overview of Designing a Multisite Clinical and Translational Science Awards (CTSA) Initiative

Advancing Community-Engaged Research through Partnership Development: Overcoming Challenges Voiced by Community-Academic Partners

Community-engaged research (CEnR) is a promising approach to translate research into practice. The Meharry-Vanderbilt Community Engaged Research Core (CERC) was established to support academic-community partnerships with the goal of improving community health. A successful mini-grant program has been used to foster academic community partnerships. We describe the process of developing, implementing, and sustaining a grant program and discuss how the program has informed our CEnR activities. Grant applications are solicited twice per year. Submission guidelines align with typical procedures. However, considerable guidance and support for applicants are provided. If necessary. Grant funds are awarded directly to the community partner. The CERC has awarded nearly $250,000 to support academic-community research partnerships. Both community and academic partners reported that the opportunity was beneficial and enriched their work. Resources provided by our mini-grant program enhance the development and sustainability of CEnR partnerships.

Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research.

Stakeholder engagement and community-engaged research (CEnR) are recognized as approaches necessary to promote health equity. Few studies have examined variations in stakeholder perspectives on research ethics despite the potential for meaningful differences. Our study examines the association between stakeholders' characteristics and their perception of the importance of 15 stakeholder-developed CEnR ethical statements. Quantitative analysis of close-ended Delphi survey. We recruited a national, non-random, purposive sample of people who were eligible if they endorsed conducting CEnR in public health or biomedical fields. Participants were recruited from publicly available information, professional email distributions, and snowball sampling. We designed our close-ended Delphi survey from the results of 15 CEnR ethical statements, which were developed from a consensus development workshop with academic and community stakeholders. 259 participants completed the Delphi survey. The results demonstrated that stakeholders' characteristics (affiliation, ethnicity, number of CEnR relationships, and duration of CEnR partnerships) were not associated with their perception of the importance of 15 ethical statements. The strong agreement among stakeholders on these broad, aspirational ethical statements can help guide partnerships toward ethical decisions and actions. Continued research about variability among stakeholders' ethics perspectives is needed to bolster the capacity of CEnR to contribute to health equity.

Trust in Community-Engaged Research Partnerships: A Methodological Overview of Designing a Multisite Clinical and Translational Science Awards (CTSA) Initiative.

Community-engaged research (CEnR) builds on the strengths of the Clinical and Translational Science Awards (CTSA) framework to address health in underserved and minority communities. There is a paucity of studies that identify the process from which trust develops in CEnR partnerships. This study responds to the need for empirical investigation of building and maintaining trust from a multistakeholder perspective. We conducted a multi-institutional pilot study using concept mapping with to better understand how trust, a critical outcome of CEnR partnerships, can act as "social capital." Concept mapping was used to collect data from the three stakeholder groups: community, health-care, and academic research partners across three CTSAs. Concept mapping is a mixed-methods approach that allows participants to brainstorm and identify factors that contribute to a concept and describe ways in which those factors relate to each other. This study offers important insights on developing an initial set of trust measures that can be used across CTSAs to understand differences and similarities in conceptualization of trust among key stakeholder groups, track changes in public trust in research, identify both positive and negative aspects of trust, identify characteristics that maintain trust, and inform the direction for future research.

Engaged for Change: A Community-Engaged Process for Developing Interventions to Reduce Health Disparities.

The science underlying the development of individual, community, system, and policy interventions designed to reduce health disparities has lagged behind other innovations. Few models, theoretical frameworks, or processes exist to guide intervention development. Our community-engaged research partnership has been developing, implementing, and evaluating efficacious interventions to reduce HIV disparities for over 15 years. Based on our intervention research experiences, we propose a novel 13-step process designed to demystify and guide intervention development. Our intervention development process includes steps such as establishing an intervention team to manage the details of intervention development; assessing community needs, priorities, and assets; generating intervention priorities; evaluating and incorporating theory; developing a conceptual or logic model; crafting activities; honing materials; administering a pilot, noting its process, and gathering feedback from all those involved; and editing the intervention based on what was learned. Here, we outline and describe each of these 13 steps.

Perceptions of Cancer Care and Clinical Trials in the Black Community: Implications for Care Coordination Between Oncology and Primary Care Teams.

Despite efforts to ameliorate disparities in cancer care and clinical trials, barriers persist. As part of a multiphase community-engaged assessment, an exploratory community-engaged research partnership, forged between an academic hospital and a community-based organization, set out to explore perceptions of cancer care and cancer clinical trials by black Bostonians. Key informant interviews with health care providers and patient advocates in community health centers (CHCs), organizers from grassroots coalitions focused on cancer, informed the development of a focus group protocol. Six focus groups were conducted with black residents in Boston, including groups of cancer survivors and family members. Transcripts were coded thematically and a code-based report was generated and analyzed by community and academic stakeholders. While some participants identified clinical trials as beneficial, overall perceptions conjured feelings of fear and exploitation. Participants describe barriers to clinical trial participation in the context of cancer care experiences, which included negative interactions with providers and mistrust. Primary care physicians (PCPs) reported being levied as a trusted resource for patients undergoing care, but lamented the absence of a mechanism by which to gain information about cancer care and clinical trials. Confusion about cancer care and clinical trials persists, even among individuals who have undergone treatment for cancer. Greater coordination between PCPs and CHC care teams and oncology care teams may improve patient experiences with cancer care, while also serving as a mechanism to disseminate information about treatment options and clinical trials. Inequities in cancer care and clinical trial participation persist. The findings of this study indicate that greater coordination with primary care physicians (PCPs) and community health center (CHC) providers may be an important step for both improving the quality of cancer care in communities and increasing awareness of clinical trials. However, PCPs and CHCs are often stretched to capacity with caring for their communities. This leaves the oncology community well positioned to create programs to bridge the communication gaps and provide resources necessary to support oncologic care along the cancer continuum, from prevention through survivorship.